Tuesday, February 14, 2017

30 Years -- Pearl Anniversary

Today marks two important dates – it's exactly 30 years since I got sick, and it's approximately the day I officially cross over into "living on borrowed time".  The day that I reach average life expectancy with this damn disease.
And in that 30 years, there has been no treatment found, no cure discovered.  The situation hasn't improved one iota.  Why?  Because the guys in DC who suffer from male pattern baldness give more research money to that than they do to this disease that actually makes life a living hell.  I wish I were joking about that statistic, but I'm not.
I've been sick over half my life and there's still not a damn thing they can do to make my life any better.  I can't even get charity help because I have the wrong diagnosis.
And then people wonder why I lost my essential optimism?  You can't wake up every day for 30 years saying hopefully "today is the day they're going to find a cure!" and go to bed every night, sighing "not today", without realizing that thinking positive is useless.  It doesn't matter how much I follow the instructions to think positively; if the necessary research isn't being funded, they're not going to find the cure.  It doesn't matter how much I think positively that "today is the day that some friend will get an attack of guilt and offer to help" when 30 years of patiently waiting for my friends to mature enough to think of someone other than themselves has produced zero results.
And what little money is allocated to research is often wasted looking into things that have nothing to do with this disease or have already been disproved.  That 105 fever was not psychosomatic.  That blood test 10x normal proves it's not depression.  But, like every disease that affects more women than men, male doctors find it easier to write it off to psychiatric reasons than to figure out what's causing the problem.

Monday, January 23, 2017

Woo won't cure this

For all of you who've fielded "helpful hints" from uninformed people....


I especially love the arguments from people who insist that something that didn't work for you when you tried it already will work now because this time THEY are the one who suggested it.  Or that it didn't work because you used a reputable, clean American brand, instead of the herbs they're pushing that are imported from a Third World country with no oversight or guarantee of purity.

Laws Chronically Ill Patients Deal With


Friday, October 21, 2016

The Real Story About Chronic Fatigue Syndrome - garnetnews.com


even a name change, which to be truthful, has not really caught on, won't solve the problem when the imagery associated with the disease continues to be benign and misleading. As we all know, images are powerful and associating the wrong ones with the disease only helps to spread misinformation.

An exception is currently on an display in Times Square in New York: a video broadcast by the SolveME/CFS Initiative, a patient advocacy organization, which shows photos of genuine, severely ill Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.

Friday, October 7, 2016

Register Today: Disability History & Employment Month Tele-panel

In a message dated 10/7/2016 8:56:48 A.M. Pacific Daylight Time, jacksone@dnc.org writes:
Celebrate the disability Inclusion Revolution with the us!
View this email in your browser
Disability History and Employment Month Tele-panel
Tuesday, October 11, 2016
2:00 p.m. – 3:30p.m. Eastern


Moderated by
Congressman Tony Coelho, DNC Disability Council Chairman
with Special Guest
Keep a watch out for announcement!
The Democratic National Committee's Disability Council is celebration Disability History and Employment Month by hosting an interactive call with two tele-panels: Remembering Our Disability History and Future Vision for Disability Employment.  
The Remembering Our Disability History is an exciting opportunity to listen in on a conversation with some of the people who collaborated to pass the Americans with Disabilities Act and guided its promise in the last quarter century.  Brush up on your history, because this is your chance to ask the questions about the things you've always wanted to know about the advancement of some of our greatest disability policy in America.
·         Carolyn Osolinik, U.S. Senate Staff (retired) – former Senator Edward Kennedy
·         Andy Imparato, Disability Policy Director – former Senator Tom Harkin
·         Kelly Buckland, National Council on Independent Living
Then Future Vision for Disability Employment will be a slightly longer panel exploring the opportunities before us to expand opportunities for disabled youth and those in the job market. This panel will host many folks who have led the way to create jobs, improve accessibility in the work place and internships and mentoring opportunities to lift up the next generation for full integrated and equal employment.
·         Joyce Bender, Bender Consulting Services, Inc.
·         Jill Houghton, US Business Leadership Network
·         Christine Griffin, National Disability Rights Advocate & former U.S. Department of Labor
·         Tom Foley, World Institute on Disability
·         Yolanda Vargas, Intern - California Foundation for Independent Living Centers
·         Jamal Mazrui, Amazon
And finally, Ted Jackson, DNC Director of Disability Community Engagement, will share recent developments for advancing disability policy through the Hillary for America campaign and supporting the Democratic ticket.  By the call's end everyone will hear about chances to get involved in this election cycle that meet their needs.

We provide live captions which can be viewed by a CART link.
Link:  https://www.streamtext.net/player?event=DNC-CE
Access Code:  J17BT63

Also check out this Virtual Fundraiser Event: 
A virtual fundraiser on Hillary Clinton's Autism Plan featuring Representative Tony Coelho and hosted by Julie Kornack, Anna Perng and Paul Terdal will take place on Thursday, October 13, from 6:00 pm to 7:00 pm EDT. For more details, please contact Julie Kornack at jkornack@gmail.com or Anna Perng at anna.perng@gmail.com.
Signing of the Americans with Disabilities Act on July 26, 1990 at the White House. President George H.W. Bush sites at a table with the White House lawn and foundatin in the bakcground.  Two men in wheelchairs sit on either side of the table.  On the left a man stands and on the right a woman stands.
Above: signing of the Americans with Disabilities Act on July 26, 1990 at the White House. Below: pictures throughout the disability rights history from rallies, marches and the 504 Protest in San Francisco., CA
People march in a parade led by people rolling in wheelchairs.  The hold a large banner that says: "An injustice anywhere is an injustic everywhere - Martin Luther King, Jr."
Disability rights icon Judy Heumann sits in her wheelchair being interviewed by members of the television press in fron of a van at the 504 Protest.
A large crowd at a rally, many of the people use wheelchairs. they hold a U.S. Flag with the stars in formation of a wheelchgair disability symbol.
A picture of Ed Roberts in his wheelchair, behind himn a man stands and holds a sign that says: "CIVIL RIGHTS FOR DISABLED."
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You are receiving this email because you signed up for the DNC's Disability Action Team, are a Democrat with a Disability or were referred by a friend or colleague.

Our mailing address is:
DNC Community Engagement
430 S Capitol Street, SE
Washington, DC 20003

Disability Positions of the 2016 Presidential Candidates

Think before you vote -- the candidates have very different takes on the disabled.

Thursday, September 22, 2016

Clinton Puts Focus On 56 Million 'Invisible' Voters With Disabilities


"This is starting to indicate that we are being taken seriously as a large population, as a group of voters who can legitimately contribute to the outcome of the election," says Ladau.

... One in five Americans has a disability. Add in their loved ones, and, advocates argue, this is a potentially powerful voting bloc. 

Friday, September 16, 2016

Myalgic Encephalomyelitis - National Organization for Rare Diseases

 studies suggest that in individuals with ME the viruses can trigger cascading events in the central nervous system through chronic activation of the immune system which, in turn, can result in widespread (diffuse) neurological dysfunction, changes at the cellular level, and nerve cell injury and death. Even when not actively replicating, an infection can lead to profound dysregulation of the immune response, causing neuroinflammation which destabilizes overall brain function, and producing symptoms with widely fluctuating severity levels Viruses also do not continually replicate, but do so at times of immune vulnerability, such as at times of physical or psychological stress. Unfortunately, viruses go latent, then they reactivate, and repeat this patterns, and once in your cells, any elevation of cortisol levels can cause the reactivation.

Wednesday, September 7, 2016

How anti-social-media sentiment hurts the disabled

Naomi Chainey shares her experience with chronic fatigue syndrome and
how social media is connecting those living with disabilities like
never before.

Those who take their potential to interact with the world for granted (the default able-bodied audience) are less likely to interpret Kuczynski's periscope as a lifeline. In actuality, Kuczynski seems to be depicting social media as a barrier to true participation.
... As fellow ME/CFSer Samantha Whitehead put it "Facebook has been such a lifeline for me. Not only because disability has curtailed my socialising, but also because I was able to maintain friendships despite being physically and socially isolated by an abusive partner."
* * *
These days, most of my good friends are from various ME/CFS support groups.  If I mention among able-bodied people that I managed to feed the cats AND myself breakfast before going back to bed, there are comments about being lazy.  In support groups, people understand what an accomplishment that is.  They recognize that there were times when I barely got the cats fed before collapsing.  I get cheers for doing as much as I do, rather than lectures because I'm not doing more.